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“Numbers call for action, personalized narratives provide support and recognition”: A qualitative assessment of cancer patients’ perspectives on patient-reported outcome measures (PROMs) feedback with narratives
Boomstra,Eva Hommes,Saar Vromans,Ruben van den Burg,S. Schrijver,A.M. Wouters,M.W.J.M. van der Ploeg,I.M.C. van de Kamp,M.W. Krahmer,Emiel van de Poll,Lonneke
Boomstra,Eva
Hommes,Saar
Vromans,Ruben
van den Burg,S.
Schrijver,A.M.
Wouters,M.W.J.M.
van der Ploeg,I.M.C.
van de Kamp,M.W.
Krahmer,Emiel
van de Poll,Lonneke
Abstract
Purpose Patient-reported outcome measures (PROMs) are questionnaires completed by patients to gain insight in their health-related quality of life. However, patients often find the interpretation of PROMS challenging. A personalized narrative, i.e., a story with patients’ experiences tailored to the reader, could help explain PROMs and might be appreciated alongside numerical outcomes. We studied how cancer patients perceive PROMs feedback presented in a regular numerical and a novel narrative format. Methods Cancer patients who completed PROMs in routine clinical practice were recruited. All participants received numerical feedback and a personalized narrative. Semi-structured interviews were conducted to uncover perceptions of both formats. Interviews were analyzed with an inductive reflexive approach to thematic analysis. Results Twenty-nine patients with breast cancer, melanoma, and bladder cancer participated. Thematic analysis identified six themes: “Understanding: I get the gist of it!”; “Usefulness: Tell me why I should complete PROMs”; “Format preferences: Numbers are cold, narratives are warm”; “Taking action: Can I do something about my score?”; “Personal relevance: Personalized narratives show me what life has in store for me”; and “Personal relevance: That’s (not) me!” Numbers seemed to help participants act, whereas narratives may provide emotional support and recognition. Participants identified with the content of the narrative yet differed in how they related to the main character. Conclusion Personalized narratives could be a useful addition to PROMs feedback. The studied formats seem to serve different purposes; numbers help to facilitate action, personalized narratives provide recognition. Implications for Cancer Survivors Personalized narratives may be a useful new way to communicate about quality of life to cancer survivors and help them to envision what the impact of cancer can be.
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Date
2024
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Keywords
narratives, personalization, PROMS, cancer, cancer survivor, quality of life, SDG 3 - Good Health and Well-being
Citation
Boomstra, E, Hommes, S, Vromans, R, van den Burg, S, Schrijver, A M, Wouters, M W J M, van der Ploeg, I M C, van de Kamp, M W, Krahmer, E, van de Poll, L & de Ligt, K 2024, '“Numbers call for action, personalized narratives provide support and recognition” : A qualitative assessment of cancer patients’ perspectives on patient-reported outcome measures (PROMs) feedback with narratives', Journal of Cancer Survivorship. https://doi.org/10.1007/s11764-024-01663-7